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Keyboard Fun for Children with Osteogenesis Imperfecta and Other Physical Limitations

Lorraine B. Erickson

Based on an article which appeared in BREAKTHROUGH, a publication of the Osteogenesis Imperfecta Foundation, Inc. Reprinted by kind permission of the author and publisher. Free copies of the original article may be obtained by sending a postcard stating the number needed to BREAKTHROUGH Editor, 632 Center St., Van Wert, Ohio 45891.

Osteogenesis Imperfecta (O.I.) is a crippling genetic birth defect characterized by fragility of the bones. Some children are so fragile that even a slight twist, bump or the effort involved in picking up a toy could cause a fracture. These frequent, often abnormally healing fractures can cause severe deformity, gross angulation and retarded physical growth. The techniques described in this article have been found to be effective, not only for O.I. children, but also for other children with hand and arm deformities, deficiencies and limitations, whether due to accident, illness or birth defect.

A child who learns to enjoy music and to play a keyboard instrument as a hobby can have a lifetime of pleasure. While music will enrich any child's life, it can give even greater happiness, satisfaction and benefits to a child with serious hand and arm problems or one whose health problems greatly limit his physical activities or cause him to be homebound. It can be a safe and enjoyable activity which gives the O.I. child a good feeling of physical accomplishment, and an emotional outlet through which he can express his inner feelings and work off his energy and the frustrations of inactivity and/or long confinement in casts.

No matter how serious a child's physical limitations are, he needs the opportunity and encouragement to do as many things and get as much out of life as possible. To have something beautiful and creative like music to talk about with pride and share with others can give a tremendous lift to the spirits of the child and his parents, and contribute greatly to the development of a positive, healthy attitude. And no problem is too great for enjoyment of some keyboard instrument as long as a child has the control and the minimal strength required to strike the keys and can do so without injuring himself. Even a child who cannot sit up alone and can move only his head could be propped up and have great fun playing a small table-model electric chord organ by using a mouthstick.

Playing a keyboard instrument will give such a child something that is fun to do and which will encourage him to use what he has with imagination, thus developing confidence and improving his coordination and dexterity. Therefore, we recommend that children start as soon as they can understand the relationship between the black and white keys. A child as young as four or five should be able to have fun learning to play his favorite songs by rote long before he can read music.

The techniques described in this article should be used only with the approval of the child's physician. I always require this for my students, and would especially urge the parents of an O.I. child to determine first that this activity will not injure his fragile bones.

The Piano and Its Damper Pedal

For the child who can sit at a piano and strike the keys in any way at all, this seems the best keyboard instrument for hand and arm limitations because it has a damper pedal which will sustain the sound of some notes while others are played. This makes it possible to spread the notes out over a wide area of the keyboard so that a beginner can play surprisingly full-sounding, satisfying music using just one note with each hand, or using just one hand alone if that is all he can do. An adjustable extension (cost $7.50), which enables very small children to use the damper pedal, can be ordered through any local music store. This extension is also useful for below-knee amputees unable to wear a prosthesis.

The boys shown playing just one note with each hand (Fig. 1 ) are 8-year-old Doug and 13-year-old Bud. Bud is the quadruple amputee featured in my earlier ICIB article1. He is a very confident and self-sufficient boy who has always gone to regular public school and taken part in all activities. He has fun playing the piano in a small jazz band and the trombone in the big school band (Fig. 2 ). Doug, an O.I., was born with over 40 fractures and with both hands folded down flat against his arms. When he was four and five years old he was confined many months in a hip spica because of repeated fracturing of the right femur. Nevertheless, he seems to be getting stronger all the time.

At the insistence of his parents, and with the reluctant permission of the school board, Doug has always attended regular public school. He is a good student and popular and we feel that he is a real asset to the class. He can walk with some support for security and balance, but goes to school in his wheelchair to avoid injury.

We really enjoy giving Doug his piano lessons, for he is a delightful boy with a marvelous sense of humor. His father says Doug took to the piano "like a duck to water." After only a few lessons he was already having fun playing several of his favorite songs for his family and for visitors at his house. At Halloween when he went playing "trick or treat" he played at every house where there was a piano.

Loose-Ligament Hands

For his age Doug is tiny, but his arms and hands are of good length and without deformity. His slim hands appear smaller than they actually are. Although not of normal strength, they are quite strong for an O.I. child and getting stronger all the time. With the typical loose-ligament problem his knuckles buckled inward so badly at first that he could not play the piano with all of his fingers, so he just used one finger on each hand and played (Fig. 1 ).

After a year Doug is playing far better than we had ever hoped he could. He can use all of his fingers now (Fig. 3 ), the knuckles buckle much less, and he can play chords and intervals. Since he can play for only about 15 minutes before his back and hands get tired, he practices for short periods two or three times a day.

Hand and Arm Deformities and Limitations

Regardless of the deformity or limitation, we feel that a child should play with his own hand if possible, using any finger(s) or part of the hand with sufficient available strength. One student has a dropped wrist with a useless hand, but she can strike the piano keys well with the index finger by propping it on her thumb.

Repeated fracturing in O.I. children often results in short arms, limitations in elbow, wrist and hand movement, and weak fingers similar to children whose problems are congenital. Some of these children are also quite small for their age, as many O.I. children are. Five-year-old Kristy (Fig. 4 ) was born with very short ulnae and the radii missing in both arms, resulting in "clubhands" and limiting her wrist movement and ability to extend her hands. She has had a great deal of surgery for cosmetic and functional purposes. Kristy loves to play the piano with her more functional fingers, and two weeks after we began her lessons she had great fun with the other children playing for a medical society meeting.

If he cannot play with any part of his own hand, the child can try holding various objects with which to reach the keyboard and strike the keys. One student had good control of her arm and could hold almost any object well with her hand, but could not use any of her fingers independently. Some children will be able to hold an unsharpened pencil and strike keys with the eraser end. If the hand cannot hold a pencil and a larger object is required, a 25c rubber cigar makes a good finger with which to play. (CAUTION! Get a plain rubber cigar, NOT the trick, exploding kind.) For a still larger object to grasp, a tricycle or bicycle handlebar grip with a corrugated surface is a possibility. The keys should be struck with the closed end where there is a protrusion.

A child with extremely short arms might be able to play with his own hands by sitting on a low stool. If not, he can hold pencils and have a better playing range. To make a pencil easier to hold with small or deformed hands, a piece of foam rubber may be wrapped around it at the unsharpened end and attached firmly with rubber bands.

If a pencil is too short for the child to reach the keyboard comfortably and keep his back straight and his shoulders level, a 5/16-in. dowel stick, cut to the desired length and rubber tipped, may be used (The preparation of rubber-tipped devices was described in the earlier ICIB article.). Pictured playing the piano with a pencil and a dowel stick is 9-year-old Ron (Fig. 5 ), who was born with extremely short humeri and ulnae and with the radii missing in both arms, resulting in limited arm, wrist and hand function. Although a pencil is long enough, Ron prefers the longer stick propped on his right shoulder for extra support and control.

A pencil can also be adapted to playing with a plaster arm cast. A 12-in. rigid plastic ruler that is concave underneath will fit the contour of a cast and can be attached anywhere along its length with an Ace bandage. An unsharpened pencil is placed in the trough on the scale side and attached tightly with rubber bands (Fig. 6 ). The eraser end of the pencil is extended beyond the ruler and is used to strike the piano keys. The ruler may be shortened if it is too long.

A board (not plywood) 4 to 6 in. wide attached along the front of the keyboard can be used to support weak arms or an arm cast and provide better control while playing. The board should be well sanded, all edges rounded, and varnished, to prevent splinters.

Adaptations for Wrist Deformities and Limitations

If the child cannot turn his hands palms down to play with his fingers in the usual manner, he can try extending one or two fingers on each hand and hitting the keys with the sides of his fingers, as 12-year-old Vicki does (Fig. 7 ). Vicki was born with short ulnae and the radii missing in both arms. Wrist movement and ability to turn the hands are limited. Her left arm will not straighten completely at the elbow. She has had surgery for cosmetic and functional purposes.

If he cannot use his own fingers and has limitations in abduction and adduction of the wrist, the child can try holding an empty, flat, plastic squeeze-type dispenser bottle (Elmer's glue comes in several sizes) between his thumb and outstretched fingers with his thumb up (as for shaking hands). The bottle may be moved up or down to obtain the correct angle for striking the piano keys. A small piece of thick adhesive moleskin attached to the dispenser tip prevents scratching or rattling on the keys.

To compensate for a dropped wrist or other limitations in wrist flexion and extension, the child may hold a sponge-rubber ball with a short pencil inserted in it (Fig. 8 ). This device has unlimited possibilities, for it can be held in the hand and moved to any angle necessary to adapt to wrist and arm deformities and limitations. Get a ball of a size the child can hold comfortably in his hand.

Start a hole in the ball with a sharp instrument like an ice pick. Push a short, sharpened pencil into the ball over halfway to hold it solidly, letting the eraser end protrude 1 to 3 in. so that the child can hold the ball and see to strike the keys. This ball will put pressure on the palm of the hand and distribute pressure evenly over fragile or weak fingers which could not strike the piano keys otherwise.

Electric Chord Organs

The child whose fingers are not strong enough to strike a piano key may be able to play an electric organ, since the keys need merely to be depressed. Try the smallest table-model, two-octave, six-button chord organ first. They cost about $15 at discount stores. Since success and enjoyment in playing with weak and/or fragile fingers or with a mouthstick depend on finding an organ which is easiest to play, try all organs available, and even try several of the same model, to find the one with the lightest touch.

If necessary, anyone handy with tools can further lighten the action of many organs. To ease the spring tension, loosen the end screws holding the two long metal bars against the key springs just enough to insert U-shaped spacers about 1/16 in. thick beneath the lower bar around each screw. Tighten the screws again. Remove the curved metal strips holding each chord button, straighten the curve slightly, and re-insert. This tinkering will probably void the warranty but the instrument will play more easily.

Versatility

This organ has great versatility for adaptations to severe limitations involving the entire body. It can be placed at any height to enable a child to reach the keyboard easily, or placed on the floor and played with the toes or with pencils taped to the soles of an old pair of shoes. It can be placed across a child's wheelchair, or attached to a tilt-table and played by a bedridden child. If he cannot sit erect, he can be propped up comfortably and the organ tilted toward him with the keyboard at a right angle to his chest so that he can strike directly down on the keys thus facilitating their depression.

Playing With a Mouthstick

Every effort should be made to play in some way with the hands, arms or feet. If this is impossible, a child can have great fun playing this little organ with a mouthstick. The more erect he can sit, the more the weight of his head will help him. His dentist should check on the advisability of using a mouthstick. If the child's teeth are missing or poor, a "lollipop" mouthstick (Fig. 9 ) will distribute the pressure on all of the teeth. The child should bite down on a heavy piece of paper. A soft sugar-pine mouthpiece a little larger than this impression should be carved, all edges rounded off and well sanded. This kind of wood will not splinter and will give a little as the child bites on it. To avoid pressure on the front teeth, a piece of carbon paper can be used to identify the area, and the mouthpiece carved out appropriately.

The unsharpened end of a pencil is inserted in the mouthpiece protrusion, glued in place with Elmer's glue or epoxy, and the organ played with the adhesive-taped eraser end. If a pencil seems too short, a 1/4- or 5/16-in. dowel stick cut to the desired length and rubber-tipped may be substituted.

The woman shown playing a little organ attached to a tilt-table is paralyzed below her neck from polio (Fig. 10 ). She does not sit erect because this crowds her weak diaphragm. The fingers of her left hand are extremely weak, but with the help of an arm sling she can press the chord buttons while playing melodies on the keys with her "lollipop" mouthstick. Instead of a pencil she uses a 14-in. length of 1/4-in. dowel stick, rubber-tipped.

Two children playing with mouthsticks can have fun together, one playing the melody and the other the chord buttons. It is also great fun for them to play with friends who play guitars, drums, tambourines, etc. The number strip on the organ can be removed and the child taught to read music and play melodies well using a single pencil first. Playing in the keys of F, C, and G will be easiest since it requires use of the fewest black keys. As the child's skill and interest increase he can graduate to two-pencil mouthsticks and to larger and more expensive electric organs and electric pianos.

Generally, a tongue-depressor mouthstick is preferred because it has more maneuverability with good front teeth and the lips (also described in the earlier article). The child starts by learning to read music and play melodies well with a single pencil mouthstick. This pencil is then moved to the right for melody notes and another pencil is added on the left for playing harmony a third lower. This makes the music even more enjoyable and interesting, but is more complicated since the child must learn when to play the harmony note and when not to play it.

Social Advantages

Given the opportunity and encouragement, a child can learn to read music well and to play with good time and expression so that he will have something beautiful to contribute. This can be especially helpful socially to a child whose physical problems attract attention.

With the fragile O.I. child it is important to establish a sensible road between the extremes of carelessness and undue caution. For his own protection, as well as for good social adjustment, he needs to understand his physical limitations and be able to explain them easily and readily to others.

Every child needs something at which he can excel and, since keyboard playing is a physical activity in which he can engage without injury, it can be a real foundation upon which to build for the future. The time is long overdue to stop trying to fit all children into a mold like peas in the "peer group" pod. Instead each child should be encouraged to appreciate his own individuality and to build on his own capabilities. The development of inner strength and a spirit of self-confidence can do more to prepare a child for life than can the acquisition of physical strength.